IAN Back to School Report 2010

Date First Published: September 1, 2010

Books and binders, lunchboxes and backpacks: it’s back to school time again. For students with an autism spectrum disorder (ASD) there are additional preparations to make. Have the goals on the Individualized Education Plan (IEP) been updated? Has a teacher been briefed on a child’s gifts and challenges? If called for, has a one-on-one aide or personal assistant been hired and trained?

At this time of year, we like to report on the educational placements and experiences of children with ASD participating in the Interactive Autism Network (IAN) Research project – the largest online autism research project in the United States.

Please Note: These Findings Are PreliminaryThe analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by parents of children with autism spectrum disorders (ASDs) from the United States who choose to participate. They may not generalize to the larger population of parents of children with ASD. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.

Classroom Settings...and Alternatives to "Regular" School

Families participating in the IAN Research project have shared information about the school experiences of more than 7,000 children with ASD who are between preschool and twelfth grade. (Please note: Families who would like to share their child’s school experiences still can by joining IAN Research.)

The graph below represents the grade level of children at the time their family completed our Child with ASD Questionnaire. At the time they registered with IAN, the majority were in pre-school through 3rd grade, although many parents were also telling us about their late elementary, middle school, and high school students. (By the way, one of IAN’s goals it to follow our children and teens as they grow, learning about and improving the transition to adulthood for people on the autism spectrum.)

More than 80% of the children were attending public schools, whether a regular neighborhood school or a school focused on students with special needs. Far fewer were in regular private schools (5%), special private schools (8%), or were being home schooled (3%).

Parents are able to leave comments for our research team as they answer IAN’s online questionnaires. Based on this rich source of information, it is clear that the school situations of children participating in IAN are incredibly diverse.

Some parents have found their local public school cooperative and welcoming, while others have found the situation at their local school so unbearable they enrolled their child in a private school, or decided to home school. Some have found a private school so unaccommodating, they switched to public school, shored up by the fact that the Individuals with Disabilities Education Act (IDEA), the federal law in the United States protecting students with disabilities, applies in public but not private schools. All parents had one goal in mind: the best situation possible for their child with ASD.

A good situation wasn’t always easy to find. In some areas, options were few. "If we were in an area with decent public schools or more of a metropolitan population, Julie would be in a public school or a more specialized private school," one mother said of her daughter. "The school she's attending is not a good fit for her, but it's the best option we have." Some families who were unhappy with the public school opted to home school, partly for financial reasons. "Public school was a nightmare for Larry,” one mother told us. “He has been home schooled for the past 14 months and is doing fine academically. We cannot afford private school.”

Parents mentioned all kinds of educational settings in addition to just public and private schools: therapeutic schools, charter schools, religious schools, and even virtual schools. In some cases, the latter are being provided by public school districts looking for a way to harness the power of the internet to reach all kinds of students who, for whatever reason, have not succeeded in a typical classroom. "Ben is at home all day, but attends virtual public school online," one parent explained. "It is one-on-one instruction. He does attend online classes twice a week where he is in a 'classroom' with his assigned teacher and up to 70 other 'classmates.'"

Inclusion: Spending Time with Typical Peers

We also asked IAN families about inclusion, or how much of a child’s day was spent in a regular education classroom or otherwise with typical peers. The answer varied depending on the type of ASD diagnosis, as shown in the chart below.

As our chart shows, we found that children with autism were more likely to spend their entire school day in a special education setting, while those with Asperger’s were less likely to do so. We wondered if these differences might partly be a function of age, as children with Asperger syndrome tend to be older as a group than children with autism. The reason for this is that they are generally diagnosed much later. We decided to look at inclusion by grade level, again only for children with a diagnosis of autism, PDD-NOS, or Asperger's.

Based on these figures, it appears that the percentage of children with autism, PDD-NOS, or Asperger's who are in regular education all day, special education all day, or a combination of the two doesn't change much once the children enter elementary school. It may be that the youngest children are receiving intensive services, with less focus on inclusion, but that a substantial number switch to a mixed or regular education program after that.

The make-up of a child's day often changed over time, depending on his or her needs and situation. Some parents spoke of starting out in special education, making strides, and then moving into more and more inclusive settings. "He was in a special ed program for 4th through 9th grade," one father said. "Because he just wanted to be a regular student in tenth grade, he was switched to a regular public high school, but still has a few special ed classes."

Others found that a child who had been able to cope in the single-classroom, socially simple conditions of elementary school were less able to manage in a typical middle or high school setting, with multiple classes, crowded hallways, and increasingly complex social expectations. "Ronnie has spent the past 8 years in a public school in regular education classes with special ed support (e.g. pull out)," one mother explained. "He is moving to a private school for special needs students for his middle schooling."

From our families' comments, it is clear how hard they struggle to somehow accommodate two often conflicting desires: the wish to have a child spend time with typical peers, in the hope they will benefit from exposure to how the other children interact, and the desire to protect and support a child who may find a regular classroom setting difficult to bear. Parents and schools are using many strategies to try to achieve some balance of these elements, from a child spending much of his or her time in a special education classroom but joining typical peers for recess, lunch, or "specials" (like music, choir, gym, or art); to having some core courses in a special class and others in a typical class; to providing "team taught" classes with both a general and special education teacher, and with both some typical and some special needs students attending. Many of our parents reported trying to arrange some exposure to typical peers outside the classroom, as well, through a religious community, Boy Scouts, or some other group.

A child's unaffected siblings were frequently viewed as very helpful models who could teach a brother or sister a lot about how typical children behave. One mother said, "At the moment I am home schooling Ryan along with his neurotypical sister. Because he is around a 'normal' child all day this has really helped him to be just like a normal kid, and she is a great role model for speech and imaginative play. Much better than being with a load of kids who have different disabilities and a teacher who is so overwhelmed she can't think straight!"

Parents reflected on the current value placed on inclusion, whether they agreed with it or not. For some, it was a core goal, a situation to be fought for. "Danny is completely included without supports in first grade. He worked like a dog to be able to keep this placement without disturbing other kids and while making huge academic gains," one mother shared. Some who couldn't arrange as much time with typical peers as they wished used television to try to bridge the gap. "It sounds crazy, but I make him watch age appropriate shows such as Hannah Montana and Drake & Josh so he can actually see what typical teenagers are up to and how they react," one mother told us.

Others felt that inclusion had been overemphasized, stressing that if a child can just "pick up" social behavior from peers, then the child likely doesn't have autism. After all, social blindness is a core component of the condition. Said one mother, "The County has forced inclusion at the expense of special education students' development and at the expense of negatively affecting the general education classroom environment. We now discourage inappropriate inclusion at every opportunity, and ask that work on applied behavior analysis (ABA) and life skills be focused on...."

A common theme was the desire to include a child as much as possible, but not to the point that it stressed the child resulting in negative consequences, like anxiety or disruptive behavior. "David has just entered a special education room on the elementary school campus," one mother told us. "His academic level is at or above his class, but his anxiety and behavior issues seem to require a smaller classroom with less pressure put on him."

Anxiety can become so acute that a child has to leave school temporarily, and some parents reported their child had been on "home hospital," which is when the school district sends a tutor to the home because a child cannot function at school for medical or psychiatric reasons. Although her son had managed from kindergarten to fourth grade, one mother reported that in fifth grade her son's "anxiety about the noises, smells, and energy of the autism class resulted in greater anxiety, so he finished the school year with a teacher coming to our home 5 hours a week. We hope to get him back in the classroom next year."

An inability to focus was another problem for some children. (In fact, our IAN data show that 29% of children with ASD participating in our research project have been diagnosed with or treated for attention-deficit hyperactivity disorder, or ADHD. Whether they have actual ADHD or a different "flavor" of attentional difficulty associated specifically with ASD remains to be seen.)

Children who could not focus in a typical classroom were sometimes viewed as willfully disobedient, and punished accordingly. "The school does not know how to address things properly," one mother wrote, distressed. "Daryl gets penalized (can't go to recess) because he can't focus on paper work. They should not punish him for something he cannot control." Said another mother who had to pull her son with Asperger syndrome out of middle school, "Instead of helping him with the Asperger’s, they thought the solution was detention."

Disruptive or aggressive behavior, which the additional stress of a regular education classroom made worse for some children, was another major issue. One mother told us her daughter had been "essentially expelled" and was being home schooled. (Although the U.S. law says a child cannot be expelled when a behavior is determined to have resulted because of a disability, parents sometimes felt the situation had deteriorated beyond redemption and chose home school or virtual school over legal action.)

An additional factor that made choosing a school setting and an inclusion scheme difficult was the gap between academic ability and social-emotional maturity that characterizes some children with ASD, particularly those with high-functioning autism or Asperger syndrome. If you imagine a child who still feels and acts like a fourth grader, but is actually a junior in high school, and fully capable of doing an 11th grader's school work, you can see the dilemma. Where do you put him? Families do not want them in a program for children with intellectual disability or academic issues, because academics are one of their main strengths, but not all of them are able to cope in a regular classroom with typical teenagers.

The Role of One-on-One (and Other) Assistants

In many cases, a special needs classroom, or a general education classroom with several special needs students, will have some teaching assistants or aides who are meant to provide help to any students who need it, but may be keeping a particular eye on the special needs students. In some cases, a child is assigned his or her own aide, called a "one-on-one" or "personal assistant." Getting a one-on-one aide is one of the ways families make inclusion work for a child who can't cope without help in a regular classroom. This person, also known as a "shadow," is responsible for monitoring and helping a child with ASD.

Because it means the school must hire and train someone, it is not always easy to get a one-on-one listed in the IEP. Nevertheless, 46% of parents taking part in the IAN Research project reported that their child had been assigned a part- or full-time personal assistant. "The best year Liam ever had was when he had a one-on-one aide," one mother said. "That year he did amazing things."

If a child does have a one-on-one, the goal is often to "fade" that person, that is, work with the child so that he or she needs help less and less, until there is no longer a need for a "shadow" at all. That process may take weeks or years depending on the situation. What the one-on-one aide is there to do in the first place varies a great deal depending on a child's challenges. Just a few of the tasks a one-on-one aide may take on are:

Keeping a child who has problems with attention on task

Keeping a child who wanders from leaving wherever they're supposed to be

Taking a child who's becoming anxious or agitated out of the classroom or otherwise trying to defuse a situation before it comes to a crisis

Facilitating social interaction

Observing social interaction and providing feedback to those responsible for social skills training

Monitoring how the child is doing and what may be causing problems in terms of sensory issues, workload, etc.

One challenge for these aides is finding the right balance between "helping" and "encouraging independence." A parent may want an aide, but also fear that an aide who never leaves a child's side will prevent social interaction, or over-help with academics.

Another challenge for one-on-ones is the fact that their role may be viewed very differently by the parent, the teacher, or the school's administrative staff. For example, the teacher may view the one-on-one's job to be keeping a child on task or removing the child from the room if he's having a tantrum, while the parent is hoping for someone to facilitate social interaction. One party may assume the aide should be in the classroom every minute, and should take a break during recess; the other may feel recess is exactly the time the aide needs to be out there making things happen with peers, or at least observing what is happening so that social skills that are lacking can be taught. The aide can get caught in the middle of a conflict between school and parent. What may be helpful is for parents not to just ask for an aide, but to make clear what they believe the aide is there to do, and document that in the IEP.

Educating Your Child's Educational Team About ASD

Based on what parents tell us, it is clear that inclusion often involves quickly educating a lot of people who were not necessarily familiar with ASDs about the autism spectrum, sometimes not until they've already begun to work with a child. This may include a general education teacher who has never before had a child with ASD in his or her classroom; a one-on-one aide who was just hired; a music, art, or physical education teacher who will have the child in a class. One helpful strategy is to provide a bulleted list of IEP goals, stated simply and clearly. (The real IEP is generally written on an official form that is lengthy and difficult to read and absorb.)

Another helpful strategy is to provide a "Quick Reference" sheet about a child: a single page that lists strengths, challenges, and proven strategies. This is particularly helpful where children with ASD are concerned because they can be very capable in one domain, and very impaired in another -- something which often bewilders people who are not accustomed to such a combination in the same person. For example, a child can have terrible handwriting, and be very slow at processing information and producing written work, but also have an encyclopedic memory and be able to talk in advanced vocabulary on a topic of interest.

As far as behavior, parents have often developed a certain "radar" where their child is concerned. Through many years of experience, they have learned when a child is in a receptive mood, or when they are building to an anxious or angry meltdown. They have learned how to defuse problems before they begin. They know which sensory issues bother a child, which activities are soothing, and what a child finds rewarding (so this can be used as a reward for good behavior, task completion, etc.). Summarizing all this on a single sheet is one way to try to transfer what the parent knows to someone who is just meeting the child.

Best Wishes for the New School Year...and Some Helpful Resources

Here at IAN, we wish all of you a fulfilling and successful new school year. To help you as the year begins, we are providing the following resources:

IAN Community: Please remember to use our About ASDs, Challenging Behaviors, and other sections to help educate those working with your child, especially those new to ASD. You can simply send them a link to any article on our website via e-mail.

Autism Speaks' School Community Took Kit: This packet of incredibly helpful information is designed to communicate how students with autism can be best supported and included in the school community. You can access this on the web by chapter or download the entire 209-page document.

There are special sections in this packet addressed to nearly anyone you can imagine your child might encounter at (or getting to) school: Bus drivers and transportation supervisors, custodial staff, general education and special area teachers, lunch and recess aides, office staff, paraprofessionals (that is, classroom aides), peers, school administration and principals, school nurses, and school security.

Parent Technical Assistance Center Network -- There is one national, six regional, and many smaller local Parent Centers who share a mission: to provide training and assistance to the families of the nation’s 7 million children with disabilities. One of their goals is to help parents "understand their rights and responsibilities under the Individuals with Disabilities Education Act (IDEA), the federal special education law." Find your Parent Center here.

Organization for Autism Research (OAR) -- This website provides some excellent materials to help parents and teachers, including "A Parent's Guide to Assessment" (by which they mean all the testing a child undergoes to receive an ASD diagnosis and/or school placement), "An Educator's Guide to Autism," and "An Educator's Guide to Asperger Syndrome." All of these can be found on OAR's Recommended Reading page.